Tuesday, September 24, 2013

Some of you may know that Anna has been dealing with nasal congestion issues since she was born.

Her pediatrician has always assured me that she would grow out of it, that her nasal passages were tiny, etc etc. This canned response has always infuriated me because they were not the ones seeing her day in and day out. They didn't see how many times a day I had to suction out her nose just so she could breathe. They didn't see the crazy, record-breaking amounts of snot that came out of the one side of her nose. And even though I explained this in detail every.single.time, they made it seem like it was no big deal.

Even though they said it would go away on its own, I tried everything to alleviate her symptoms. We used a humidifier, Vick's vapor rub, sat with her in a steamy room, and used saline drops and suction. I even completely eliminated all forms of dairy from my diet, hoping and praying that would help her breathe better. I took her to the pediatrician twice specifically to have her nose evaluated, but they weren't concerned. Keyword: They.

So imagine my complete lack of surprise when the ICU doctors informed me that Anna's MRI revealed she has choanal atresia. It is the complete blockage of one side of her nasal passage. She has never been able to breathe out of the one side, and the other side was constantly congested. This condition does NOT go away on its own, and will require a minor surgery at some point.

And this right here folks is yet another example of trusting your instincts.

I KNEW that Anna's congestion was not normal. I KNEW that she couldn't breathe well. And I KNEW the doctors were wrong in that she would just grow out of it.

Between this and their diagnosed "3 week stomach flu" that turned out to be a life-threatening condition, one could say I am more than a little incensed at my pediatricians office. I have not decided what this anger means yet.

On one hand, I want to wreak havoc and go to every single health grading and review website and rip them a new one and destroy their reputation.

On the other hand, I recognize that 99.99% of the time, when the pediatrician tells a parent that their child will be fine, they are fine.

But we were that .01%. And I am just struggling with their lack of action over the last month. I keep asking myself that if they had given her more than just a cursory glance at each visit, if they had thought "Gee, more than a week of vomiting might mean a head/brain issue", could Anna's strokes have been prevented? I guess we'll never know.

I know for sure neither one of my children will step foot in that office again, if for no other reason than all of my trust in them has gone completely and unequivocally out the window.

I'm not sure writing scathing reviews on this practice will prevent future kiddos from being misdiagnosed, but my hope is that writing this will encourage all parents (and especially us moms) to trust our instincts when it comes to our children's health. I no longer care what people will think of me. Call me "Psycho Mom" call me paranoid, what have you... I am an advocate for my children, and you can bet your bottom dollar I will NOT back down when it comes to their health.

Anna is doing pretty good today. She made it all day yesterday without having to be "tapped" (the word for draining excess fluid from the area above her brain), but around 4:00am they came in and did the procedure, though it was only a small tap so that was encouraging.

The Chief Neurosurgeon came in this morning and said that Anna will be having surgery tomorrow morning. They will place a shunt in her head that will help her body drain this excess fluid from her skull on it's own, and at a rate that matches with her own growth and development.

They still can't say with 100% certainty what Anna's condition is. They are still running lots of tests, gathering information, and even reading medical journals and research studies to try and figure it out. One of the neurosurgeons was in her room yesterday for almost 2 hours just looking at her, asking us questions, and watching her vitals. He called her a medical mystery in the sense that she doesn't fit into a set category with a common diagnosis.

The theory they are working on now is that she has an extremely rare case of benign macrocephaly. In almost all cases, this condition means nothing for a child other than that they may have a larger head with excess spinal fluid that they just grow into as they age.

In Anna's case, this excess spinal fluid that is between her brain and her skull does not drain on it's own, and never will. This excess fluid causes pressure to build in her head and caused the strokes, her vomiting, tiny hemorrhages behind her eyes, and all of the other really bad and scary things that have been happening to her these last 4 weeks.

So even though they cannot 100% confirm this diagnosis (at least not today), her treatment would be the same regardless. The shunt is necessary, which means surgery is necessary. No surgery is without its risks, but in her case the benefits far outweigh the risks, which is why the surgery will happen sooner rather than later. Without it, it is likely Anna wouldn't be able to leave the hospital and would need to be continuously monitored, and right now all we want is to be able to go home with her.

We are waiting for the neurosurgery folks to come back in and explain the procedure in greater detail, but frankly, all I care about is that she is in the hands of experts, and these experts tell us that she is going to be fine.

Still, we are sitting here in sort of a daze, realizing that tomorrow our 4 month old daughter is having brain surgery. BRAIN SURGERY. And that thought is scary as hell.

Anna is doing much better today. Overnight, they commented that this was the best she has looked since she arrived. She is smiling like crazy this morning! That first smile had me sobbing. It was the first time since we've been here that I have actually felt like we'll get our Anna back.

All of her vital signs and levels are up significantly from yesterday too. They will still likely have to drain more fluid from her head today to keep her comfortable, but it's been 24 hours since the last one. They were draining it about every 6-8 hours before, so any improvement makes me ecstatic.

Many people don't believe in signs, but I think most would agree that coincidences happen all the time. Some believe it's just that... coincidence, while others believe that

the timing has some other important message behind it.

So it's hard for me not to see the coincidence in Anna's sudden improvement today. Today is September 22, exactly 3 years since we lost Anna's brother, Jack Benjamin.

I guess I could view this coincidence as a sign that the whole month of September sucks and that we should all stay in a bubble this month every year because it's the worst month ever.

Or, I could see it as a tiny sign that maybe there's a tiny angel in heaven looking out for his little sister today.

By the time we arrived at Children's Hospital, Anna was so lethargic that she couldn't even open her eyes. We checked in to the Emergency Room, and they immediately rushed us back to a triage room.

All of sudden, at least 15 people were swarming around my baby. Lots of doctors, lots of words I didn't understand, and lots of concerned faces.

Right now, what we know is that there is excess fluid around her brain, which caused her to have two small strokes. By the grace of God, the doctors don't believe that she will have any long-term damage or negative effects from these strokes, but they are still trying to determine what happened. They are zeroing in on a diagnosis, but they are reluctant to put a name to it until they have observed her for a little bit longer.

What they do know is that what she has a very rare, but seemingly treatable condition. Because it is so rare, the part of me that runs to Google for everything is in a tizzy because her condition can't be Googled.

The doctors and medical staff here are absolutely wonderful, patient, and compassionate. There is an entire team here dedicated to pediatriac stroke research, and I know she is receiving the best care imaginable. They are keeping us informed every step of the way, and the staff in the PICU is checking up on us around the clock. No question is met with impatience, and every person from the welcome desk attendant to the chief of Neurosurgery is treating us like we are the only patients in this hospital. They are helping us to see the light at the end of the tunnel.

Anna will not be better tomorrow. We don't know when we'll get our happy, smiley, perfect baby girl back in our arms and in our home, but we have been given many reassurances that tell us that we will get to that point.

Thank you again for all of your messages. We do read them, and are touched by every comment and every word.

It's hard for us to not think things like "Why Anna?" and "Why our family?" but we are choosing to stay optimistic because we are fighters, we are strong, and we know we will get through this and come out on the other side with an even greater perspective on life and love than we did before.

Monday, September 23, 2013

For those of you who don't know, our world has recently been flipped upside down. Because I use this blog to document the major milestones in our lives, I am transferring all of the text from our CaringBridge website over here.Thank you all so much for your concern for Anna. We can't thank you enough for all of your thoughts and prayers, gift and messages, and kind words.Here is the beginning of the story:3 weeks ago, Anna started vomiting. We took her to the pediatrician, they said she had the stomach flu and that it would run its course in a few days3 days later, she was still vomiting, so we went back to the pediatrician, where they told us that sometimes it takes babies longer to get over these types of bugs.* She went two days without vomiting and started up again. Took her back to the doctor and they said the flu gave her acid reflux. They gave us a prescription for Zantac and said she would be better within a week. * She went another few days without vomiting, then it started up again. I called the doctor daily, and each time they assured me that her vomit was actually acid reflux and that she would be better soon. Last week, the doctor agreed to run some tests on Anna. We had to go to Children's Hospital to get her blood drawn, and due to the vomiting, she was so dehydrated that they had a hard time collecting her blood. All of the results came back normal.Last weekend, she seemed to get better again. On Sunday, she was smiley and happy and back to her normal self. On Monday, our daycare provider let me know that Anna was vomiting again, and just seemed genuinely unwell. We had her 4 month checkup the next day, so we decided to wait and bring her in then and ask more questions as to why this was still happeningMonday night, Anna went through various stages of unhappiness. She fussed/cried/moaned pretty much all night long. The only thing that consoled her was either nursing or holding her in a specific position. We tried everything to make her happy, but to no avail.On Tuesday, Anna couldn't keep anything down without vomiting. By the time I got home to take her to the doctor, she hadn't eaten without vomiting since 6am that day.Took her to the pediatrician. Tried to feed her and she vomited twice in the room. The doctor said they would run an upper GI test in 2 days to see if there was some kind of blockage in her GI tract.Tuesday night, Anna got worse. Couldn't eat without vomiting, and just cried off and on. I decided that I wasn't going one more day like this. Called doctor first thing and said we needed to move GI test up, and they scheduled her for 1:45pm on Wednesday. Anna was inconsolable and by the time we got to the center to get her GI tract x-rayed, it had been 18 hours since she had eaten. She even threw up the barium from the GI test. The radiologist couldn't find a blockage or any GI-related reason why she was vomiting so much. They said that our pediatrician would "be in touch." That answer was not acceptable. I lamented to the radioologist that she had been vomiting for 3 weeks, and how could this possibly be "normal?" She wasn't sure, but she made an off-handed comment about her head, asking if we had noticed that it had gotten any bigger. Bev was with me at the time, and she told her that yes, she had noticed that Anna's head looked strange/different from the last time that she saw her.The radiologist called our pediatrician, and they sent us over right away. Armed with this new information, I was not leaving that office until they told me what was wrong with my daughter.The pediatrician came in, felt her head and fontanelle (aka "soft spot") and told us that we needed to go to Children's Hospital immediately.

Tuesday, September 3, 2013

We were on our way back from Nashville, TN, after the beautiful wedding of my sister (in law) Mackenzie.

At the time, we were a family of three:

And everything was wonderful.

As we approached Columbus, I commented to Jon that I felt "off." I thought maybe it was just car-sickness, but I just felt SO weird.

When we got home, we decided to have a low-key night and watch a movie. I sent Jon to the local Walgreen's for a Redbox movie and brownie mix. I needed brownies you see.

While little Emerson was crawling around upstairs, I remembered that I had old pregnancy tests in my bathroom cabinet.

And then something clicked.

I thought to myself: "Self, are you pregnant? No, I can't be pregnant. No way."

But to assure myself that I wasn't pregnant, I decided to take a test anyway. I barely had time to get it unwrapped before I needed to chase after Emerson, so I just left it on the counter and went after my little monster.

10 minutes later, I remembered it, and came back to the bathroom, fully expecting to see a stark white negative.

But I didn't. Two lines. I was pregnant.

OMGOMGOMGOMGOMGOMGOMGOMG.

So Jon gets home from his brownie/movie excursion, and I tried to give Emerson the test to give to him. But she kept trying to put it in her mouth. Gross. So I was just like, "JUST TAKE IT FROM HER" and he was all like "WHAT DOES THAT MEAN?" and I'm all like "YOU KNOW WHAT IT MEANS" and he's like "WE'RE HAVING ANOTHER BABY???" and I'm like "WE'RE HAVING ANOTHER BABY!!!!"

And here we are, one year later.

I can't imagine a world without this sweet, beautiful, happy little girl.